Peripheral T cell NOS Non Hodgkins lymphoma

po18guy said:

Monthly

Hey, Cathy! Not surprising that it relapsed immediately. CHOP is a real hit or miss regimen - but there is no recommendation for PTCL. I had dose intensive CHOP plus Etoposide (CHOEP) for four cycles, followed immediately by four cycles of GND (Gemzer, Navelbine and Pegylated Liposomal Doxorubicin). Mine relapsed immediately, as well. That is when the clinical trial of Romidepsin (Istodax) opened up. I entered the trial and went into complete response. I have remained there now for over four years. I was receiving infusion for 3 weeks in a row, then a week off for my blood to recover. After a bit over a year in remission, I dropped to treatment every two weeks. Another year after that, and I went to single monthly treatments, and scans are still clear. Where we go from here is anyone's guess - we simply don't know, as we are experimenting.

Be careful with all alternatives, and please run them by doctor! Immune boosters are fine, but skipping sugar has zero value. Why? Our blood requires sugar for cellular and organ function. Our blood sugar level is very closely regulated or we become diabetic, or hypoglycemic. The same with alkaline water and other supposed cures. If we were in a Petrie dish, all of this might work, but our bodies function in a very narrow and precisely regulated range. If we starve the cancer, we also starve our body - there is simply no way around this, since the cancer is a part of our bodies. Now, targeted therapies like Romidepsin single out the tumor cells for destruction and basically leave the healthy tissues alone.

Here is a T-Cell Lymphoma presentation that was put on by my doctor, a T-Cell Lymphoma specialist at Fred Hutchinson: http://www.presentme.com/audio2012/20121111LRFShustov/

Yes, CSN is not asy to find replies on. Best to begin your own thread and check it daily for posts. Thank you, as prayer has sustained me.

Jim 

Hi Jim,

Just had to say something about the alkaline water, a man I don't know came up to me the other day and started telling me about his miracle cures such as the water and wanted for me to drink this alkalined water that's suppose to kill cancer cells, I didn't know what to say but trust me I didn't believe him. I have such luck with attracting those types of people, always trying to sell me the miracle cure for everything! Damn I should already be a millionaire with all those remedies hahaha! Thanks for the information, it's always very informative! Take care

Sincerely,

Liz

it's nice to actually find some people who have experience with this rare disease. My husband was just diagnosed on 10/30/14 with Perioheral T-cell lymphoma NOS. He has been sick since June 2014. however, 40 mg of prednisone made him feel a lot better and made the masses in his lungs decrease. He is currently onmy on 10mg of prednisone and new nodules are growing. His last PET scan showed no other involvement. No other lymphnodes or bonemarrow either. He was due to start CHOEP yesterday at MD Anderson but he developed an infection due to his wisdom teeth. Now he will have to have them removed next week and take 14 days of antibiopics before chemo can start. After 4-6 rounds of chemo he will do an auto stem cell transplant. We are scared that he may get worse in the next two weeks waiting on the healing of the surgery so we are praying this does not effect a positive outcome of treatment. I am also 29 week pregnant with our first child so this has been extra scary for us. 

Has anyone ever heard of PTCL presenting just in the lungs? We've been told it is almost never the case.

Best wishes to all of you who are dealing with this rare disease in some way. God bless!

Mcdv1 said:

New to all this...

my mom is 72 and just got diagnosed with NHL - T-cells...prob arises when pathologist after 2wks still can't determine if it's viral or what?  They say hers is so rare that they really don't know how to approach it but like many here it seems they start with CHOP.  Shes already lost weight so I worry starting chemo will just be that much harder... I struggle with having known 3 others personally who have fought the good fight only to go thru so much and still die... I struggle with knowing that my parents are a bit naive about all the chemotherapy and the ups and extreme downs they will go thru...there are 6 of us kids and being so early in this mess we just aren't communicating well so I've shut down... I don't want to reply to anymore calls or text... It's frustrating and so tiring... I think and over think it all... I live 8hours away from my mother and I would love to just drop life where I'm at and be at her side , but I struggle with the fact that I am the babysister for my nearly 2yr old granddaughter and although there are other family nearby that could help I struggle even more with that knowing how I missed my daughter being molested by her own uncle... I can't leave her and I can't not be by my mothers side and I'm receiving pressure all around... I'm just stressed worried and at a loss as to what to do... My sister will be with mother soon and will stay thru 3 sessions of her chemo... But my parents still insist I must be... I feel it's because I have been always much closer to them as in practically daily calls and of course visits... I don't know which way to go...

First you must stop blaming yourself for not realizing the molestation. It is a horrible thing to have happened but if it was a relative that you otherwise had every reason to trust, how could you have predicted suh a thing. I have an opposite situation. I would never let my girls stay overnight with my in-laws becaue I didn't trust my father-in-law. The man died over 10 years ago but to this day my husband thinks I am nuts to have felt that way about him. 

I think you should work with your daughter to come up with a way that your grandaughter can be cared for so you can spend some time with your mom. Is there a way your daughter & granddoughter could even come with you? I hope you can work something out so you can see your mom.

Kary said:

Lymphoma Pheriperal T cell NOS

Hello! I live in Brazil and my beloved father, 65, was diagnosed with peripheral T-cell lymphoma unspecified, stage II, made 6 sessions of CHOP and 20 radiotherapy sessions.We finished the treatment last week and is in remission from the third chemotherapy. Given the high recurrence rates of this rare type of cancer, I would like to share experiences. Thanks.

Hello.  I am glad your father responded so well to Chemo and Radiation. My husband was diagnosed with PTCL NOS on November 2013. He started 6 sessions of R-CHOEP in January and was in remission after the fourth round.  Had an autologous stem cell transplant which is the protocol in the US. it has a 50% chance of curing the patient. Unfortunately, as strong as my husband is (he is 65 now and never got sick from chemo or transplant and felt basically very good throughout the whole ordeal), the cancer recurred almost a year later. He will now go on one of the varipous clinical trials available in NY. After that he will have an allogeneic transplant.  This relapse was so shocking because in December everything was completely fine. he has no symptoms and looks great. Fortunately he is in very goos spirits and gowing forward with a lot of hope.

Good luck for everyone battling this beast and please tell us how you or your loved ones are doing.

annie3 said:

PTCL NOS

Hello.  I am glad your father responded so well to Chemo and Radiation. My husband was diagnosed with PTCL NOS on November 2013. He started 6 sessions of R-CHOEP in January and was in remission after the fourth round.  Had an autologous stem cell transplant which is the protocol in the US. it has a 50% chance of curing the patient. Unfortunately, as strong as my husband is (he is 65 now and never got sick from chemo or transplant and felt basically very good throughout the whole ordeal), the cancer recurred almost a year later. He will now go on one of the varipous clinical trials available in NY. After that he will have an allogeneic transplant.  This relapse was so shocking because in December everything was completely fine. he has no symptoms and looks great. Fortunately he is in very goos spirits and gowing forward with a lot of hope.

Good luck for everyone battling this beast and please tell us how you or your loved ones are doing.

Hello! I sincerely hope that your husband get well soon. It heal, please send me news. My father is well, he is strong. Side effects of treatment if they left. He is working normally. Next week will do further tests to check for disease control, will do a CT scan and in three months will make a new petscan. Which hospital the name of your husband comes. It is public? I wonder what the clinical trial it right now. As I said doctors used the CHOP and radiotherapy. Only a medical wondered the possibility of an autograft. His stage was II, which stage of your husband? Lots of light and faith to you guys. Hugs.